Event on 11 April, 2018
David Tuller in Adelaide
David Tuller's visit 5th-10th April 2018.
Meetings with clinicians, researchers, academics and consumer advocates; a radio interview and public lecture; and catching up with the locals.
David is an investigative journalist and Senior Fellow in Public Health in Journalism at the Center of Global Public Health, University of California, Berkeley. He was a journalist and editor at the San Fransisco Chronicle for ten years and writes about health for the New York Times.
David has been instrumental in pushing back against the harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapyn (CBT) that have come from the PACE trial.
David's original expose was 15,000 words and he has written extensively since.
ME/CFS SA has supported David's work by signing public letters and writing to the President and Principal of Queen Mary University London.
Before his visit to Australia, David Tuller interviewed Penelope McMillan to learn more about the general situation. Penelope spoke on behalf of the peak body, ME/CFS Australia, with support from Chair, Geoffrey Hallmann, and then-Treasurer, Tricia Quan.
David stayed in the homes of members. He was welcomed to Adelaide by a casual evening meal with our committee and some of our members.
David found time to visit a wildlife park to hold a koala and feed kangaroos. There were also opportunities for him to decompress at the southern beaches and to wander around the city.
South Australian Health and Medical Research Institute
At SAHMRI, David discussed the cytokine study with clinical lead, Dr Mike Musker, and laboratory lead, Dr Martin Lewis, followed by a visit to the laboratory and biobank freezer. David was able to meet Pamela Saunders, then-President of the Australasian Biospecimen Network Association, to talk about the potential Australian ME/CFS biobank. David also had the opportunity to discuss models of community engagement with a representative of the Wardliparingga Aboriginal Research Unit.
University of South Australia
UniSA hosted a lunch meeting for David to discuss the 2 day VO2max CPET bike study and the pacing study. The researchers present were Dr Katia Ferrar, Professor Jon Buckley, Dr Kade Davison and Dr Ashleigh Smith. Dr Max Nelson was unable to be there. Study participants, Penelope McMillan and James Hackett, also attended. David gained a good insight into the thinking of the researchers involved and heard about the use of heart rate monitors to protect the safety of participants.
Bioethicist, Rachel Ankeny
David was appreciative of his chat over morning coffee with bioethicist, Professor Rachel Ankeny of the University of Adelaide. Rachel was able to link David to people specialising in paediatric bioethics, who might be willing to join the actions against Esther Crawley’s Lightning Process and online counselling approaches to children with ME/CFS. Rachel also discussed her paper on the impact of different levels of consumer engagement on the quality of clinical guidelines.
Rheumatologists, Barbara True and Richard Kwiatek
David met separately with Dr Barbara True and Dr Richard Kwiatek, both of whom are clinician-researchers. Both Richard and Barbara have concerns about the diagnostic criteria, with regard to blurring with fibromyalgia and the issue of sub-groups within ME/CFS. In particular, Richard feels there should be more research to operationalise the diagnostic criteria and cited the UniSA studies as helpful in this regard. Richard also discussed the SA brain studies, including the importance of identifying structural change over time.
Bridges & Pathways Clinical Research Centre
David spent time with Dr Bruce Wauchope in his GP clinic at Tonsley Park and with Cathie Powell at Bridges & Pathways. This gave David some insight into the GP and practice nurse protocols, and clinic best-practice and research projects.
Health consumer advocate, Debra Kay
At the Health Consumers Alliance of SA, David discussed the current Cochrane Review of consumer engagement in health, with the Review’s consumer lead, Debra Kay PSM.
Young Australians with ME/CFS
David spent a couple of hours talking online with people from across Australia who are members of the Young Australians with ME/CFS group.
Sue Gilbey interviewed David, our Chair, Penelope McMillan and member,Tania Emms, for Radio Adelaide, A Piece of the Action.
On his final evening in Adelaide, David gave a public lecture covering his work on PACE.
Members can access the video of this event in Member Resources.
Last edited: 12 December, 2020